One of the worst things about being a Lyme patient is the lack of congruence amongst doctors when it comes to treatment. This is largely the results of poor diagnostic testing, lack of research, and the use of medications that are over 70 years old. As if treating Lyme wasn't hard enough patients are often co-infected with multiple tick borne diseases such as Babesia, Erhlichia, Bartonella, Mycoplasma, and Rickettsia. Patients that struggle with multiple infection are undoubtedly much harder to treat and I have found that doctors are dramatically divided in their treatment approach of such individuals. So if you have multiple infections which doctor do you believe and what approach do you take?
The best that I have been able to do is consult multiple LLMD's and follow the treatment approach that makes the most sense to me. Some context is definitely in order here. I was diagnosed with Bartonell, 2 types of Erhlichia, and 2 types of Rickettsia. My western blot and PCR for Lyme from Igenex was negative, but I was diagnosed with Lyme based on my symptoms, multitude of co-infection, Low NK CD57, and high C4a. One of my doctors, we will call this individual Doctor A, firmly believes that Lyme cannot be treated unless you treat all the co-infections first. Another doctor I am seeing, Doctor B, believes co-infections and Lyme can be treated at the same time. Another valuable resource I have found online, Doctor C, suggests that if you adequately treat Lyme your own immune system will likely be able to get rid of the co-infections on its own. In all likelihood these doctors are all right and all wrong depending on what patient they are treating.
I had to start somewhere so I went with Doctor A's approach. After 8 months of antibiotic treatment I am no longer testing positive for Bartonella or Erhlichia. However, NONE of my symptoms have improved or worsened during this time. Also, my C4a and NK CD 57 have remained relatively steady. I say relative because I did 40 treatment of Hyberbaric Oxygen Therapy (HBOT) and my C4a dropped considerably, and my NK CD57 had a 7 fold increase. Unfortunately these numbers returned to their pre-treatment levels once I stopped HBOT.
Never the less, this experience revealed something. If I got rid of two co-infections why have none of symptoms improved even a little? Why did the HBOT have such a positive impact on my C4a and NK CD57 when the antibiotics, which were co-infection specific, did not? Why do I not have ANY symptoms that are specific to these infections? Also, I was incredibly healthy before I became I'll. That is to say that the onset of my illness was rapid. When my first symptoms started to show I had been living on the West Coast for about 8 months. Prior to my move out west I had lived in New England. All my doctors are in agreement that I was originally infected out there, and was probably infected years ago. So, if I was infected years ago from a tick bite, and am now just becoming symptomatic, what are the chances that I simultaneously reactivated 6 different things as opposed to 1. Remember that most test's look at antibody titers against a certain infection. A positive test does not necessarily mean that you have an active infection (I am going to write a separate blog about this). Considering all the above information it seemed to me that my co-infections were not really an issue that needed to be addressed. Was I just wasting precious time going after these infections? I ran this theory past Doctor A and this individual does not agree with my theory and maintains that we have to resolve the rest of the co-infections before going after Lyme.
I then decided to consult Doctor B regarding this issue and this individual was in partial agreement with my theory. Doctor B decided to add a Lyme specific antibiotic to the mix on top of the co-infection specific antibiotics prescribed by Doctor A. This approach seems to be casting a wider net and is allowing me to take care of more things at one time.
I recently came across Doctor C's recommendations and feel this approach is more applicable my personal situation. I have a feeling that many individuals walk around with asymptomatic diseases. This isn't a problem because for the most part your immune system is in a sort of equilibrium with these diseases.
The point I am trying to make here is that Lyme and co-infection are a clinical diagnosis. The tests we have are terribly unreliable. A positive test result doesn't necessarily indicate an active infection, and similarly a negative test does not necessarily mean you are not infected. Simply looking at a test result without looking at the whole clinical picture is a voluntary dismissal of relevant data. When you put all the pieces of my story together it looks more like I have 5 resolved co-infections, and 1 unresolved Lyme infection.
Everyone's situation will be different and require a different approach. However, you need to educate yourself as much as possible and question your doctors. It's clear that the science behind Chronic Lyme treatment is still being written which means you have to assume some level of responsibility for your treatment. No one will ever care about your health as much as you do.
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